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Everything posted by adensmore

I have GAVE and have bi-monthly endoscopies with argon plasma coagulation. I had the procedure at least a dozen times with no complications. It's quick and absolutely painless. They put me under with an amnesiac, pain medication, and a sedative, as well as an anti-emetic. I'm unusually hard to put to sleep since I take a prescription pain medication regularly, so I can't imagine that your doctor would have to use all 4 drugs like for me. The entire procedure lasts 45 minutes. I'm usually sleepy later that day, but otherwise, I've had no side effects. It has cut down the number of transfusions I've had to get considerably. I don't think you need to be worried at all.
Best of luck,
April

Dr. Shanahan left Duke June 30, 2007. Dr. E. William St. Clair is now the head of the Rheumatology department at Duke. He has been my doctor since Dr. Shanahan left Duke and I have been very pleased with him. He is a great doctor and once you get to know him, he is a very caring man. I highly recommend him.
April in Raleigh NC

Karen,
Has your doctor looked into why you are so anemic? I was severely anemic 2 years ago and my rheumatologist had me tested for Watermelon Stomach. Sure enough I was bleeding from my stomach. I had no pain, no symptoms (other than being tired). Now I go to the gastroentrologist every other month to have my stomach cauterized.
I have a port a cath. They originally wanted to give me a PICC line but since I have no visible veins and they can't get an IV in me at all, they decided on a port. I really love it. It's just below my clavicle on the right side of my chest. I had to be put to sleep to get it, but it was no big deal. I would highly recommend a port because it doesn't require any care, other than getting it flushed once a month, and you can keep it in for years. I've had multiple blood transfusions in it, a RN can draw blood from it, and they use it to sedate me when I'm having a medical procedure. No more multiple trys to get an IV in or trying to get blood for labs. I don't know what I would do without it.
April

Whatever you decide, make sure they give you Mesna with the cyclophosphamide to prevent hemorrhagic cystitis. I wasn't given Mesna and I've been through a terrible time since October with bleeding from my bladder, very large clots, 2 surgeries, 18 days in the hospital, bladder spasms, etc..... By the way, I took a very large dose of cyclophosphamide, 1720 ML for 12 months. My white blood cell count would not drop with the lower doses of cyclophosphamide so my doctor kept increasing it until I had the response he was looking for. In addition, my skin scores did not improve and my lung function did not improve. April

I've had 19 treatments in a Hyperbaric Oxygen Chamber (HBO) for hemorrhagic Cystitis caused by cyclophosphamide toxicity at Duke. I'm supposed to have a total of 60 treatments. In general HBO is used for wounds that are difficult to heal, the bends, carbon monoxide poisoning, radiation tissue damage, stroke victims and brain injuries. They are using HBO on me as an adjuvant therapy to the two bladder cauterizations I've had to stop the bleeding and clotting. The doctors say it looks like a bomb went off in my bladder. I bled for 2 months and 2 weeks before my surgeries received 6 units of blood because the bleeding and clotting was so severe. While in the chamber they "dive" you to 2.5 ATA's which is approximately 48 feet below sea level and then infuse the chamber with 100% oxygen. You remain in the chamber for 2 hours. The 100% oxygen is carried to your organs and tissues to promote quicker healing. I've been told that it will not help scleroderma, except for scleroderma patients that have digital ulcers that won't heal. Just as a side note, my hemorrhagic cystitis could have been prevented if a drug called Mesna had been give to me while I was receiving the cyclophosphamide. If any of you are receiving cyclophosphamide please ask your doctor if you are receiving Mesna too. Mesna binds to the cyclophosphamide and prevents bladder damage. As far as I know, I'm the only scleroderma patient who received cyclophosphamide and then got hemorrhagic cystitis who is being treated by hyperbaric oxygen. I think Duke is going to write a paper about me. Woohoo, my 15 minutes of fame. Stay warm!! April

I could probably write a book on hemorrhagic cystitis caused by cyclophosphamide. I just got out of the hospital after being there for 10 days for this problem. I had 12 cyclophosphamide treatments for Scleroderma. I was given 2 large bags of saline to hydrate me before , during and after the treatments, and thought every precaution necessary was being taken to prevent damage to my bladder. I guess I'm just the unlucky one who this happens to occasionally. Almost 2 months after my last treatment, I started bleeding from my bladder regularly when urinating. Then I began passing large clots. I was seen by a leading Urologist at Duke and given Elmiron to treat the bleeding. However the bleeding went on for 7 more weeks. I finally found myself in the ER with a blockage from a large clot Thanksgiving weekend. My hemoglobin was down to 8.1 and I had to get 2 pints of blood. The bleeding and clots continued for several more days and then I had another blockage. This time my urologist admitted me to the hospital and inserted a 3 way catheter to flush my bladder. I had two Alum treatments while at the hospital, but the bleeding and clots still continued. To give me a break from the hospital, my doctor sent me home last Sunday. At this point I'm just waiting to see what my next treatment will be. I know that if I continue bleeding that the next treatment options are very serious. If I had to do it over again, I wouldn't have ever taken cyclophosphamide because not only did it not help my scleroderma at all, it caused damage to my bladder that may require major surgery to fix.

Dave,
I'm so sorry to hear that you're still itching. I'm sure you have tried every over the counter lotion or cream on the market. I've had a lot a success from one lotion and will be happy to give you the name if you send me a message. You may have already tried it, but if not, I hope it helps. I also have Dr. Shanahan's email address and phone number in Wilmington if you want to contact him. I'm sure he would be more than happy to help.
Other than the terrible itching, how are you feeling? Are you feeling the benefits of the stem cell transplant?
Warmly,
April

I have a fast heartbeat too. The last time I went to the doctor is was 133. Let us know how the Atenolol works. If it helps, I ask my doctor about it. I worries me a lot that my heart rate is so high.
April

I completely understand what you're going through!! In addition to Watermelon Stomach, I have GI issues every day. If I'm not constipated, I have diarrhea. I went to a specialist at Duke and he determined that the muscle around my bottom has stopped working so I am incontinent too. I wear a pad daily and keep an extra pair of underwear with me in case I need them. It is so frustrating and embarrasing!! I'm constantly worried that I've had an accident. :( The only treatment the doctor recommended was biofeedback, but it's rather time consuming and I miss enough work with all the other doctor's appointments I have to go to.
Warmly,
April

Nelly,
I have watermelon stomach and have to have an endoscopy every 2 months. The first couple of times I woke up during the procedure. NO FUN!! After that, they increased my Versed and Fentenyl, but I still could remember parts it. The last time I had an endoscopy (2 weeks ago) they gave me phenegren in addition to the Versed and Fentenyl, and they had a terrible time waking me up. I slept for 16 hours straight after I got home and I was really dopey the next day. I don't know which is worse, being awake or being overly sedated.
I woke up during my colonoscopy too. It was extremely painful!!
Best of luck,
Warmly,
April

Susie,
I understand completely!! I had a teriffic relationship with Dr. Joseph Shanahan, at Duke and he left to go into private practice in another city in July. He gave me a sense of hope that no doctor has ever given me before, plus he managed my Scleroderma and all its many problems wonderfully. I wanted to follow him to his new practice, but he thought it would be to my benefit if I stayed at Duke since they have expert technicians to test my breathing and heart function, etc...
I met my new doctor at Duke last week. He's the head of the department, so he's very knowledgable. I just don't have the history with him that I had with Dr. Shanahan. I'm guess I'll just have to have patience and let him catch up with me.
I wish you the best of luck finding a new Internist that you have a great rapport with.
Hugs,
April

I've had esophageal spasms for 2 years. They can be quiet painful. The first time it happened I thought I was having a heart attack. It was terrible!! My doctor prescribed Nitroquik tablets and they take the pain away in minutes. I couldn't do with out it!!
April

I don't have much energy or stamina, and am looking for ways to get back in shape. I work full time so I'm usually exhausted at the end of the day. My husband thinks I should have a minimal exercise routine so I won't lose muscle tone. I have a lot of joint pain, lots of skin involvement and moderate lung fibrosis. For others who exercise on the board, what do you do? Thanks and I look foward to your responses. :)
April

Methotrexate isn't so bad. I took it in the pill form for over a year before switching to injections. The only side effect I had it that it upset my stomach if I didn't take the pill with a meal.
I don't take the injections anymore as my skin is too hard to give myself the shots (OUCH!!) I really felt like Methotrexate helped me a lot and I can tell that my joint pain is much worse since I'm not taking it anymore.
I really think it will help you feel better. Sometimes it takes a while to get the dosage adjusted for you, so just be patient.
Warmly,
April

I'm a veteran of endoscopies because of watermelon stomach. I have them once a month. They give me medications to achieve 'conscious sedation'. I sleep like a baby and wake up fine and ready to go. You have to have a driver and they tell you not to make any important legal decisions for 24 hours :P

I've my taking IV Cytoxan for about 8 months. My lung disease hasn't progressed, and in general I feel like I have more energy for about 2 weeks out of a month. I would recommend it. Stay very hydrated for about a week before and a week after the chemo. I take Zofran for the nausea and have no problems at all.
Warm wishes,
April in NC

I get these too. The skin on my forearms and above my elbows (almost to my shoulder) is very tight and covered in small white hard bumps. They itch like crazy. I often get scabs on my arms and if I scratch them off then I have a big hole that forms an ulcer. They take months to heal and are VERY painful. My rheumatologist recommended a special bandage that I could only find at a specialized pharmacy. If you email me I give you the name of the bandage. They're 4" x 5" and cost around $7 each. I cut the banndage up to the size of each ulcer, so one bandage can last several weeks. I currently have 9 ulcers and have had one for 4 months. My rheumatologist also recommends putting an antiobiotic ointment on the ulcers to speed healing.
Best of luck, these ulcers are one of things that drive me nuts about scleroderma.
April

I have a Hiatal Hernia. It was diagonosed on an Endoscopy I had in conjunction with my watermelon stomach. I used to have a lot of esophageal problems but since I started taking Nexium twice a day, those symptoms have subsided. Well except for the watermelon stomach....I still have that and I have to have my stomach cauterized monthly to control any bleeding.
April

Is Birdman having his treatments at Duke? I've had 6 cytoxan treatments at Duke. Dr. Shanahan tried to get me into the SCOT trial, but I needed large doses chemo to get my white blood cell count to drop so I was disqualified from the trial. :huh:
The 1st dose of Cytoxan is a low dose and then they keep increasing it until the white blood cell count drops. I had 4 treatments before mine dropped. The first 3 treatments weren't bad at all and I felt very little nausea. I was dizzy for a few days and had "chemo brain". The 4th and 5th doses were a doozy and I felt terrible. :wacko: All I can say is drink a lot of water to get the chemo out of your system as soon as possible.
Best of luck and if you want me to share anymore of my experiences with chemo, don't hesitate to ask.
April